ethics

Razib Khan comments on the ethics of making your genome public without the consent of your family: "On genetic privacy".

For example, if you have one of the high penetrance BRCA mutations, you may not want to expose your family’s information for pragmatic reasons. But my question would be: why do people talk about their highly heritable illnesses in public forums already? I’ve seen media profiles of women with a BRCA mutation, with female relatives. By talking about this they’re exposing their family’s genetic information implicitly. Therefore, I suspect many of the pragmatic concerns are moot, because though there is privacy in regards to health information, there isn’t a taboo about discussing one’s health status in public.

Many people diagnosed with highly heritable disorders don't make their diagnoses public. Many talk publicly only after consulting with relatives. There may not be a taboo against discussing health information, but there is certainly no expectation that health diagnoses are public information. Many people believe that their family's health is nobody else's business and act accordingly.

Still, this is an important point. Why do we perceive it as being more invasive to sequence a genome than to take a family medical history?

The family history point suggests that there is no ethical standard. You do not have an expectation of privacy about your relatives' medical conditions.

This seems a newsworthy story by Ian Sample at the Guardian: "Britain ponders 'three-person embryos' to combat genetic diseases".

If ministers and MPs give the procedures the green light, Britain would become the first country to offer treatments that lead to children being born with DNA from three people: their parents and a woman donor. The amount of DNA from the donor is tiny compared with the parents.

About one in 6,000 people is born with a disease caused by genetic glitches in their mitochondria, the biological batteries that power the cells in our bodies. Mitochondria are inherited only from mothers and contain just 37 genes, held separately to the 23,000 genes that shape our appearance and define much of who we are.

Nuclear transfer is in principle one of the easiest methods of genetic engineering. In this case, they are talking about taking a donor egg and then transferring the nuclear genetic material from the parents' fertilized egg into that donor egg. It's taking the cytoplasm from one woman (including all the mitochondria in that cell) and grafting on a whole diploid genome from a cell with two other parents. It is a cloning technique, although interestingly the Guardian article does not use the word "clone" anywhere.

This technique would really only be useful to parents where the mother has a heritable mitochondrial disorder, so that's a small population. But it's possibly a growing population as genetic tests become more widespread, as some disease-linked mitochondrial variants go without noticeable effects in younger adults.

Peter Morgan and Glenn Reynolds, from their book The Appearance of Impropriety: How the Ethics Wars Have Undermined American Government, Business, and Society (available online "Chapter Five: A Plague of Originality").

In fact, appearance ethics not only fail to foster better behavior in those they govern, they also undermine the behavior of those who apply them. One of the chief appeals of appearance ethics to its enforcers (who include the corps of press and commentators) is that – much like reprinting press releases as news – judging appearances requires little knowledge of substance, allowing one to discuss the issues without the need for bothersome research or thought. Classical thinkers on ethical matters had a term for this tendency to avoid hard work. It was called laziness, and it was not considered a virtue. Another appeal of appearance ethics is that it provides something to talk about: when appearance ethics are the rule, even an unsubstantiated accusation can be said to create a bad appearance. Thus, even an unsubstantiated accusation provides grist for the mill of news flashes, op-eds, and talking-head shows.

The classical term for this sort of behavior was malicious gossip and it, too, was not considered a virtue. This powerful appetite for accusations based on appearances itself encourages bad behavior: when the prevailing attitude is "where there’s smoke there’s fire" we should not be surprised to find a brisk trade in smudge-pots. This was known as temptation.

That all of these human characteristics exist should come as no surprise. That they exist, by design, in an area dedicated to the improvement of ethics would have surprised classical thinkers. We should be concerned that it goes unremarked today.

Seems apposite to recent discussions about ethics in anthropology. Self-proclaimed ethics defenders rely upon a widespread willingness to judge appearances, rather than do the hard work of engaging with evidence.

Virginia Hughes, in National Geographic News, takes on the subject of whether we will someday clone Neandertals: "Return of the Neanderthals". She gets into the technical issues a bit and discusses George Church's book Regenesis, which touched off the Neandertal cloning discussion earlier this year.

Toward the end of the article, I get to share some of my own thinking about the utility of Neandertal biological discoveries:

Neanderthals' climate, diet, and disease exposures were not the same as those of our ancestors, and left different adaptive marks on their genome. And yet Neanderthals are far more similar to modern humans than the animals commonly used to study disease, such as fruit flies and rodents.

"There are issues that humans have now, where it's very plausible that Neanderthal biology might actually show us something," Hawks says. "Our knowledge of the evolutionary process could guide us toward possible treatments."

This is a message I've been sharing with public audiences for the last year. Our knowledge about human evolution is now shaping the way we approach medicine and health in ways we never could have imagined ten years ago. It's inspiring to know that paleoanthropology has begun to really matter in human biology.